Category Archives: GI consultant

Good Doctor, Exceptional Doctor

A couple of weeks ago the BMJ blog published a guest post written by Sharon Roman, an MS patient. The subject : “What are the qualities that make for a good doctor and what can patients do if they’re missing?” (Link to blog at the bottom of this page)

It struck a chord as, over a period of 40 years, I have met a large number of doctors, consultants and even a few surgeons. Some have been good; some bad; some exceptional; some would be better off in research roles. I would put my current gastro in the exceptional category, especially if he is reading this just before performing a colonoscopy on me. But, in all honesty, there is nobody else I would rather have sticking a camera where the sun don’t shine. He can handle bends better than Lewis Hamilton.

One of the qualities that Sharon highlighted was the sense of safety that a good doctor gives the patient. It’s not something I had really thought about, not consciously at least, but I now realise that the feeling does underpin the best consultations and helps encourage open discussion. In a safe environment you tend to open up.

I’ve thought long and hard about the qualities which I believe elevates a good doctor to an exceptional one and this is at the top of my list. If pushed to sum it up in a single word it would be “adaptability” but it needs more explanation :

 

The ability to read body language and “language” language, if that makes sense. That’s picking up the messages in a patient’s demeanour and the words they use and then adapt how the consultation is structured.  Carefully choosing the words or medical terms that get used and ensuring the patient understands them. Definitely not sticking to a “one style fits all” approach or spending the whole appointment staring at notes on a computer screen.

(That got me wondering what training is given in “people skills”? I accept there will be the “naturals” who already have an inherent ability to adapt their consultation style but what of the others who have that innate skill in varying degrees. Are particular medical students steered towards research rather than patient facing roles?

..and then off on another tangent – do doctors have their own categories for us patients and how quickly do they decide which we are? How are we classified – hypocondriac?; realist?; fatalist?; verbal diarrhoearist; “would be medical expert” trained by Dr.Google?)

Half way through her post Sharon voices her fear that the exceptional doctors will become burnt out, victims of their own success. It’s a subject I have discussed with my own consultant as temporary referrals from other hospitals inevitably choose to become permanent patients and his department’s workload is ever increasing with static resource levels.

Shortly after reading her post I happened to hear an interview on the radio (BBC Radio 5 – Pienaar’s Politics) with an eminent surgeon who had become so stressed and disillusioned by the pressures within the NHS that he has left the profession and now bakes waffles in SW19. As he said “you only get one shot at this life”.

If we turn the question on its head – “What are the qualities that make for a good patient or an exceptional one?” There are the obvious – “takes their medication”,  “turns up to appointments” but are there other behaviours we can adopt that will ease the pressure on doctors’ time and resources? Maybe this would be a good subject for a future #patientchat.

Link to Sharon’s post – http://blogs.bmj.com/bmj/2017/09/13/sharon-roman-in-good-hands

Plan for the Worst, Hope for the Best

(In my experience this was not a typical colonoscopy. If you are about to undergo a similar procedure don’t let this post put you off. There is always the option of more sedation)

I said in a previous post that my last gastro appointment had been “interesting” but the offer of a colonoscopy “with an audience” would take that to the next level.

The last one was in July 2016 so why another one so soon?  I had also undergone an MRI scan and the results were very definitely at odds with the scope. There was also the little matter of the latest calprotectin test which showed a value of 896 (high). It was all pointing to my 6 years of drugs free remission coming to an end. I had resigned myself to restarting a drug regime and repeat surgery drawing closer.

Saturday 11th March 2017 – St.Thomas’ Hospital, Endoscopy Suite

The day of the scoping arrived. By 10:30 I was wristbanded and cannulated. I went off to change into a pair of very stylish paper boxer shorts  with a velcro flap up the back. Once I had donned  hospital and dressing gowns it was into the male waiting area until they were ready for me.

Eventually the Gastro registrar appeared and went through the procedure. He explained that he would start off and then hand over to the lead consultant when we were joined by the audience (via a video link). We agreed I would have minimal sedation as I wanted to be able to watch the images and ask questions.

He lead me down to the procedure room where I was greeted by the nurses. Whilst I was being prepped we discussed the use of azathioprine and potential bone marrow suppression. We also touched on Crohn’s and the link to portal vein thrombosis. I hadn’t realised that patients with active disease are more prone to clots such as DVT. Everything was now ready. The lead consultant came in and introduced himself.

I was asked to adopt a fetal position and, with a liberal handful of KY jelly, the scope started it long journey northwards. The image appeared on  a large screen above us. In the bottom left hand corner there was a feature I hadn’t seen before. The consultant referred to it as the “sat nav” and it showed the position of the endoscope in the colon.

It was not an easy journey as my sigmoid was tending to loop as the scope attempted to pass through. There was a lot of changing position – lying on my right side, left side or back – and lots of pressure put on my abdomen by one of the nurses pushing down. It was also a long journey as the aim was to go a short way into the small intestine past the anastomosis (the rejoin after my temporary ileostomy).

In the room next door my regular consultant was acting as chaperone to the group of international gastroenterologists who had come to St.Thomas’ to see “how we do it” in the UK. The screen on the wall flickered into action and two way communication was established. He briefly outlined my Crohn’s history and I was able to fill in some of the details. He explained the MRI issue that needed resolving and called up a copy of the report from my electronic file.

With a lot of perseverance, and gas to inflate the gut, the scope had reached the rejoin. I wonder whether the distraction of the video link caused me to relax and let the scope pass more easily. From then on the consultant gave a running commentary on what appeared on the screen. It was fascinating and informative. There was a debate between the 3 gastros as to which Rutgeerts score they would give my anastomosis. Was it i0, i1 or i2? The conclusion – i0 – no signs of ulceration.

Next they went through the MRI report and the scope was moved to the locations identified to see if any strictures were present. None found. One of the consultants remarked – “Scope 1 – MRI Scan 0”.

One thing that was apparent throughout my gut was a slight reddening (erythema). The scope was zoomed in to examine it and to look for any tell tale signs of active Crohn’s but found nothing.  The consultant decided to take a few biopsies. I had never seen this done on previous scopings so watched with a mixture of interest and cringing. What looked like a small crocodile clip appeared from the end of the scope and, under voice control, nipped into the wall of my gut. I waited for the pain but nothing, just a small trickle of blood. I suppose that is why you are given a mild sedative. He decided to take a deeper sample so the device went back into the same location and took a further bite.

By now the scope had been in for about 45 minutes and it was finally time for it to be withdrawn. Always a relief. But what about the raised calprotectin level? They would have to come up with a non-Crohn’s explanation for it. The lead consultant bade farewell and I was wheeled out to Recovery. Experience over. When else would you get a chance to listen in to 3 leading gastros discussing your case and with the evidence before your eyes?

Before leaving the unit I was given a copy of the Endoscopy Report, which I have reproduced below, and it included a possible explanation for the callprotectin result. We will have to wait for the biopsy results to be certain.

Endoscopy Report

I had started my journey (real journey so acceptable use of word) this morning expecting to be starting medications or at worst seeing surgery on the horizon. I was leaving for home with a much more positive outcome, hence the title of this post.

The only downside was the length of the procedure. Usually I suffer no side effects from a scoping but this time I ached a fair amount for the next 24 hours.

Two days later I went to see my GP to arrange for a bile acid sequestrant to be prescribed to treat BAM. I arrived expecting to take away just a prescription and ended up being referred to a surgeon, but that’s for another time…..

24+ hours in Accident and Emergency

Another unplanned trip to hospital but certainly a lot less fraught than the last time I was taken to A&E on the occasion of the veins in my esophagus bursting. That was back in 2012.

This latest visit would be a good chance to witness the much publicised NHS A&E in crisis from first hand, and also find out what was wrong with me. I decided to record my progress through the system (which is why this is a long post).

THE ROAD TO A&E

Last Friday lunchtime I was making my way indoors, after doing some outside chores, when I started to feel nauseous. It was bad. Then the shivers appeared. I started to shake violently and uncontrollably. This took me back to the period immediately after my ileostomy when I woke up in Recovery. The solution that day was for the nurse to cover me with a Bair Hugger, a hollow blanket into which they blew hot air.

I sat on the sofa for a while and slowly the nausea passed but the shivering continued and my extremeties where freezing. Nothing for it but stick the electric blanket on maximum, fill a hot water bottle and go to bed. I finally managed to get to sleep and around five hours later woke up to find all the symptoms gone. Very strange.

The following morning my wife commented that I was turning yellow. That rang alarm bells because it was one of the signs I had been told to look out for as an indicator that I had problems with my liver. Should I go straight down to my local A&E now? I was feeling OK. I posted the symptoms on the PSC and BAM support FB pages and asked for opinions. They started trickling in. The concensus was that it could be very serious and that I should go down straight away.  To be honest the thought of going down to A&E over the weekend did not fill me with enthusiasm and I decided, since I felt OK, I would go and see my GP first.

First thing Monday I called the surgery and was offered an appointment for 11:00. I mucked out (stables) and then set off to the doctor’s. The consultation must have lasted 20 minutes and he concluded, that given my medical history, I should undergo tests as I did look jaundiced. The only way to get tests done urgently was to make my way to A&E. We then discussed whether I should go to East Surrey (local) or St.Thomas’ (my usual hospital). I said I would seek the advice of my consultant at St.Thomas’ before making that decision. I sent off an emai to which there was a prompt reply saying that I should go to my local A&E.

I decided it would be worth packing an overnight bag, “just in case”. I actually referred to one of my old posts for a checklist – http://www.wrestlingtheoctopus.com/top-tips-for-hospital-survival-updated-november-2014/

After lunch I was given a lift down to East Surrey Hospital, Redhill.

TIMETABLE IN A&E

13:49  Booked in at reception. The indicator board was showing just over 2 hours wait to be seen. Each time I glanced at it the time was increasing. Luckily I had a book with me.

14:54 Called in by Assessment (Triage) Nurse who went through details of my medical history, current symptoms and medications. When she had sufficient information she took me through into the main A&E area. So far so good, just over the hour since admission.

15:15 Handed over to A&E Registrar who took me to a curtained cubicle, fitted me with a cannula so he could take blood tests. There were a number of phials to fill and, something I’d not seen before, a couple of bottles for blood cultures. Once he had sent them off for analysis he came back and asked a lot more questions about my medical history.

Obligatory cannula selfie – as required by The Patients’ Code

Because my recent medical history is complex I had the presence of mind to take a copy of the chart I had drawn up showing the period 2010 to 2017.

Here’s the document – Medical Record Chart – 2010 to 2017

16:00 First blood results returned and OK. It would be the later samples that were of more interest. I was impressed as it was only an hour from being assessed. To free up the cubicle I moved to a chair in the waiting area.

18:07 The good progress made earlier had lulled me into a false sense of optimism. The A&E Registrar told me that I would be kept in overnight in order to carry out an ERCP in the morning. I was taken to the CDU (Clinical Decision Unit) and given a bed. It would be a lot quieter here. I decided to stay in my normal clothes and sat in the bedside chair reading my book.

18:20 Dinner is served.

Cordon bleu dinner

In the past I have defended NHS hospital food but in this instance I’ll let you decide. I took a few mouthfuls and resigned myself to a night in A&E. Since the CDU is just for transitory patients there are no overbed entertainment units. I would have to content myself reading my book.

The CDU (Clinical Decision Unit) – photo taken on second day in A&E

19:10 The A&E Registrar reappeared. He had discussed my case with the Medical Doctor and Consultant doing their Ward Round. They were not as concerned with the blood test results now they have the full set. The Medical Doctor would come and see me to decide way forward with a view to me going home that night and then having scan at GSTT.

21:20 Still waiting to see Medical Doctor. Went and found nurse to see what was going on. He bleeped Medical Team. I explained that I was concerned that by the time I got discharged it would be too late to expect a lift home.

22:43 Still no sign. Nurse bleeped Medical Team for third timehhh.

22:52 Nurse came to tell me that Consultant will be around to see me in the morning. I got dressed for bed and attempted to get some sleep.

07:40 Did manage to get some sleep apart from a few disturbances. Nurse said that Consultants ward round starts at 9:00 so I would see them some time after that.

10:55 Call on my mobile from my GP to see how I was. Thanked him for ringing and explained that I was still waiting to see a Consultant after 21 hours. I would let him know what happened.

12:00 Pointed out to a nurse that I had been due to see the Consultant that morning. He said “it’s complicated” which got me thinkng but he meant my condition but he meant the situation. There had been a communication breakdown and he didn’t know why I wasn’t seen last night. The Medical Registrar was now, personally, going to deal with my case. The nurse had seen the original A&E Registrar and told him that his patient from the previous afternoon had still not been seen.

12:40 One of the Junior Doctors appeared and asked me how I felt. I replied “forgotten”. We went through my medical history and symptoms again. She would go off and discuss with her boss. They would come and see me in next hour to hour and a half.

15:05 It was now 24 hours since being admitted to East Surrey A&E and I was still waiting for the Consultant to come and discuss treatment or the next steps. I started to wonder what the implications of self discharge would be. I didn’t want to jeopardise any future tests.

15:20 Went and found a nurse and asked them to contact the Medical Team to find out what was happening.

15:30 The junior doctor reappeared with her boss, the Consultant. He apologised and said I should have been seen that morning and had a blood test. We went through the prognosis.  He thought the most likely cause was a gallstone blocking tube on Friday but had now passed through. The plan was to take a quick blood test and then for me to see a member of Gastro Team between 17:00 and 18:00. If they are happy then discharge.

16:00 A nurse came in to take the blood samples and then send them to the lab.

17:50 A member of the Gastro Team appeared. It was my old consultant who I saw between 2000 – 2009 and I got on well with. It was nice to be re-acquainted. After a short discussion he said “you’re too well to be in here. I’m going to discharge you but I want you to have a follow-up blood test and an ultrasound scan at a later date.” (He was quite happy that this current episode be closed out by East Surrey rather than referring back to St.Thomas’.) All that was now stopping me from leaving was the paperwork and he was passing that task to one of his junior doctors to complete.

18:05 Dinner arrived. I didn’t want to risk going hungry by turning it down but when I lifted the cover it appeared that the greater risk would be eating it. Not wanting to tempt fate, I had not changed into my outdoor clothes yet. I went back to reading my book.

19:15 The junior doctor that I had seen twice that day already appeared with the necessary paperwork. All I needed to do was get dressed and wait for the nurse to hand over the dischargeletter.

As ever the NHS nurses were great – friendly, professional and caring. (Although I already knew this)

WHAT DID I EXPECT?

I have attended A&E many times, both as patient and accompanying others, so I already knew that getting treated was going to involve a fair amount of waiting around. This is why I chose to go to A&E unaccompanied.

In the past I’ve been on edge the whole time, waiting for each step in the process. This time I was determined to change this. I decided to set my own “target” times at the end of each step for the next one to start. That way I could settle down to my book and would not need to be constantly looking at the clock. If the next step started before my target, then it was a result, and if it hadn’t started then it was time to go and ask someone what was happening.

I knew that my first concern would be to find out what was causing the problem and what the solution was, but coming a very close second would be getting discharged as soon as possible.

It was the first time I had been in A&E since setting up a Twitter account and I decided that Tweeting would be a great way of recording my progress through the system and giving praise (or brickbats) as required.

HOW WAS THE EXPERIENCE FROM A PATIENT’S POV?

It all started very positively. The first blood tests were back promptly. The subsequent wait for two hours was bearable. When I was taken to the Clinical Decision Unit at 18:00 I had resigned myself to staying in overnight ready for a test in the morning.

It was when the A&E Registrar came back an hour later and said I would be seen by a consultant and could be going home that night that I started to feel unsettled. He was doing his best to keep me informed with his best information but now I was up against a finite time frame as I wouldn’t want to be told at 23:00 “OK, you can now go home”.

Despite the best efforts of the nurse it was not until 22:52 that I was finally told that I would not be seen that night. Tweeting turned out to be a great way of relieving tension and I saw no issues in “live tweeting” the situation. Others may disagree?

My new expectation would be to see the Consultant the following morning so you can imagine my frustration as having seen nobody by 12:00 and then to be told that “due to a communication problem” I had not been seen the previous evening. It was another 20 minutes  when a junior doctor appeared, no doubt prompted by the nurse’s bleep. Up until that point it felt like the CDU was just an area where a patient could put and then forgotten about by the doctors.

At this point I could have become very wound up but decided to leave it until I had been there 24 hours from admission. At that point I still hadn’t seen a consultant and I felt it really was time to escalate my situation.  It must have worked. In the meantime I dashed off a few more Tweets and started to think about the implications of self-discharge.From then on we seemed to be back on track and things happened in a timely manner.

WHAT CAN THE SYSTEM LEARN?

Communication. Communication. Communication.

How many times is this held up as the main complaint of users across a broad range of services. Visiting A&E is a stressful experience for all participants. If that stress can be minimised then it must be best for everyone.

Maybe the Consultant was particularly busy on the Monday night. I was hardly a priority case, but a simple message to the CDU asking a nurse to explain would have relieved the situation. The same again the following morning. A message saying that the doctor was running late but assuring me I hadn’t been forgotten would have made all the difference. Instead it was down to me to keep chasing at the relevant juncture.

Now or Later?

Are you a “Now” or “Later” person? When you’ve undergone some test or maybe an MRI scan do you prefer to get the result/report as soon as it is available or do you prefer to wait until you see your consultant?

I’m definitely the former. I like to know what could lie ahead so that I can come to terms with the worst scenario and then, if reality is actually not as bad, result!

When it’s something like a calprotectin test then it’s simple to compare the new value to previous ones and identify the trend. (I dropped a sample into the Path Lab for analysis just before Christmas and should be able to get the result soon).

The problem comes when you read a report that is well beyond one’s own limited medical knowledge or experience. I had such a report arrive in the post last week. The MRI scan itself was carried out at the end of last July but if you’ve read my previous couple of posts you’ll see that there was an apparent conflict between it and a subsequent colonoscopy. I had asked my consultant to send me through the text and he duly obliged.

Before we go any further here it is :

“MRI Small bowel study :

Comparison is made with the previous MR in April 2012. Previous ileocolic resection again noted.

There is stricturing seen in the proximal and distal sigmoid colon as before, with relative sparing ol the midsigmoid colon. As before there are adhesions between the rectosigmoid, proximal sigmoid and the dome of the bladder which is tented upwards and slightly thickened, suggestive of developing colocolonic and colovesical fistula formation. No intravesical gas is however seen at present. There is moderate prestenotic dilatation with the descending colon measuring 6.1 cm in diameter

As before a further stricture is seen in the proximal transverse colon measuring 10 cm in length, with slightly less mural thickening than before. Moderate prestenotic dilatation of 4.8 cm is seen. There is further stricture seen in the ascending colon over a length of 5 cm. Mild mural thickening and oedema is noted in the caecum and distal 5cm of the terminal ileum as previously.

The small bowel loops are suboptimally distended, with the impression of adhesions between the small bowel loops and anterior abdominal wall. No definite further strictures or active small bowel disease is seen. Mild splenomegaly is demonstrated at 15 cm as before There is a mild atrophy of the pancreas. Gallstones noted within a slightly thickened gallbladder as previously. Solid organs otherwise unremarkable.

No intra-abdominal collections. Small trace of fluid within the pelvis.

Conclusion: Appearances are similar to previously with stricturing seen within the colon, associated prestenotic dilatation, and evidence of penetrating disease as before.”

I mentioned this to another IBD patient to which they replied :

“This is exactly the reason why I don’t like getting copies of blood results or test reports as it always throws up questions that would not otherwise be there (particularly if you are feeling well). And it creates a feeling of unwelcome uncertainty when there is not a medical person to explain it….”

I can understand this reasoning and, having read the above I’m starting to think that maybe that’s the way forward.

There are four words in particular make me wonder what lies ahead – “stricture”, “fistula”, “adhesions” and “penetrating”. I’ve experienced them all before and it ended up with surgery. If I need further episodes under the knife then it’s not really a surprise. My consultant quotes the average time between surgeries for Crohn’s patients as 10 years. I’ve reached six and a half from the ileostomy, but before then (perforated bowel) it was 30 years.

Surgeon’s drawing of surgery – October 2010

Next time I see my consultant it should be an interesting conversation. How much of the report could have been expected given my past history? Are there any pointers to the progression/reawakening of Crohn’s disease? What next? Does it point to surgery sooner rather than later?

Once I have my latest calprotectin results back then I must get a date for that next appointment……

Until next time

 

The A to Z of my Crohn’s

30th December 2015 – I’ve been writing a book, maybe it’s more accurate to call it a journal,  showing how I went from diagnosis in 1978 to my current state of remission. From it I have extracted an A – Z.

It’s not meant to be an exhaustive. Some items are common to hospital or surgery and the rest are more specific to Crohn’s/IBD and related complaints but these things have amused, surprised, or quite simply, scared me along my “Crohn’s Journey”. I hope you learn a few new things and experience none of them…

….and I hope you will read my book when it sees the light of day.

(In the grand scheme of things my experiences pale into insignificance when you read some other Crohn’s patient’s stories of both surgery and their ongoing concerns)

Anaesthetist – the last person you see before going into the operating theatre. The one that says “I’m just going to give you something to relax you”. Don’t believe them unless your definition of relaxation is being knocked out cold and waking up several hours later, or am I getting mixed up with a good night out in Tooting? The next time you wake up you should be in Recovery (or Accident and Emergency if it was Tooting).

This may seem odd but I really look forward to the point at which you are about to get the sedative. From that point onwards you are totally in the hands of others. There’s nothing left for you to do or worry about that can influence what is about to happen. You can let fate take over completely. You’ll go to sleep and hopefully, when you wake up, the reason you’re in this situation will have been resolved.

On a more morbid note the anaesthetist could be the last person you will ever see so try and smile at them.

Banding – another new term on me and describes the action of “killing off” or “obliterating” a varicose vein by tying it with a rubber band. My veins (see Varices) were very inconveniently located down my esophagus so required a specially adapted endoscope to place the bands. After the procedure you can only eat very sloppy food for 48 hours as you don’t want solids to dislodge the bands before they have taken effect. BTW – I’ve just completed my 10th procedure.

Endoscopy Report

Bile Acid Malabsorption (BAM) – not something you see discussed very often. All the fun of Crohn’s-like bathroom dashes but without the inflammation. According to NICE the vast majority of patients, who have had their terminal ileum removed, will suffer from it. I wish I’d been told about this before they removed mine.

If I’ve got this right then your stomach digests food by dissolving it using bile acid. The mixture then passes into the small intestine and when it gets to the terminal ileum area the bile acid gets reabsorbed into the biliary system ready for the process to start again. If you’ve had the terminal ileum removed there is nowhere for the acid to be re-absorbed so it passes into the colon. The colon is not designed to cope with this level of acidity and its first reaction is “evacuate”, you can guess the rest.

There are various medications available to counter the effects of BAM. I manage with just Loperamide.

Bile Bag – the name says it all. I’d never heard of or seen one until I was recovering from my reversal operation in June 2011 and my digestive system had gone into lockdown. I was suffering from really bad nausea which the surgeon said affected around 25% of patients undergoing colorectal surgery. The decision was taken to relieve the pressure and I ended up with a tube up my nose and down into my stomach. Whatever comes out needs to be collected and that’s where the bile bag comes into its own.

Bone Marrow Biopsy – just the mention of this procedure is enough to make my GI consultant squirm. My initial reaction was “so you’re going to push a needle through my hip bone and take a sample of the marrow within? How does that work then? Can’t see that’s possible as bone is hard. You don’t need a drill do you?”

Despite my scepticism it is indeed possible to push a needle, with a little effort, through bone. I even ended up having it done twice. It stings a little but as the= haematologist said – “You’ve got Crohn’s, you’ve dealt with pain! This will be nothing by comparison”.

Cannula – the plastic tube with a sharp point that gets put into a vein, usually in your arm, to allow the introduction of fluids such as saline solution or blood transfusions. I’ve lost count of how many I have had during the last 35 years. They’ve been administered by nurses, paramedics and junior doctors. The first two have always been OK but letting a junior doctor near you with a cannula is a big mistake. I know they have to learn somewhere but I’d rather not be the guinea pig. I even asked the last doctor, who attempted a cannula insertion, if he was experienced in the procedure and he assured me that he was. Within an hour I had to have a new one inserted by a nurse.

Cannula

As you get more experienced at being cannularised, and especially if you are going to be on a drip for a while, you’ll get to know the best place for them to be positioned. Definitely avoid your elbow joint otherwise every time you bend your arm the flow stops and the alarm on the pump unit starts sounding. By preference the cannula should be sited somewhere that will allow you to eat, write, use a phone and go to the toilet without too much inconvenience.

One of my first experiences with a cannula was in 1979 when it was decided to feed me intravenously. The cannula was inserted just above my wrist and then a catheter was introduced than ran up a vein in my arm, over my shoulder and then turned back downwards for a few centimetres. It could have put me off for life as it took 5 attempts, two in my left arm and three in my right arm, before the tube was successfully positioned.

(If you’re wondering what the difference between a cannula and a catheter is – the cannula has the sharp end so is used to make and opening into a vein; a catheter has a blunt end and can be inserted into an existing orifice)

Colonoscopy – sticking a camera where the sun don’t shine. As with many procedures that you have to come to terms with when you have IBD the thought of what is going to happen is worse than the actual experience. I don’t find the colonoscopy itself too bad but I know that many do. It’s the 24 hour fasting beforehand that I struggle with.

I like to keep awake during the procedure as you get to see exactly what the consultant is seeing and if you have any questions they can be asked there and then. You find out what’s happening inside your guts in real time and don’t have to rely on being told after you wake up or at your next appointment.

Dexamethasone – a steroid – the work of the devil. Dexamethasone is like a steroid on steroids. About 5 times as powerful as prednisolone for the same tablet dose. It had been found that in some patients a short, sharp course of this drug could dramatically improve platelet count. I was about to have a liver biopsy and my platelets were very low so was given a dose of 40mg for 4 days. All was well for the first 3 days and then I started to get hiccups and an uncontrollable appetite but on day 4 I started acting as if I had Tourettes. Very odd. I mentioned this to my consultant some weeks later and he confirmed that steroids can have strong psychological effects. I won’t be taking those again.

Enhanced Recovery Programme – I had my ileostomy at St.Thomas’ Hospital in London and was given the choice of participating in their Enhanced Recovery Programme. I could have opted out but grabbed the opportunity with both hands. The pre-operative assessment, planning and preparation before admission mean that you are given comprehensive information on what will happen, when it will happen and the likely outcomes. Instead of going into the unknown when you enter hospital you already have a good idea of what to expect. I found it helped me to become incredibly calm about the whole situation.

Here’s a section from the NHS Institute for Innovation and Improvement as it neatly sums up what this is all about :

“The enhanced recovery programme is about improving patient outcomes and speeding up a patient’s recovery after surgery. It results in benefits to both patients and staff. The programme focuses on making sure that patients are active participants in their own recovery process. It also aims to ensure that patients always receive evidence based care at the right time.

Advantages of the enhanced recovery programme are:

  • Better outcomes and reduced length of stay
  • Increased numbers of patients being treated (if there is demand) or reduced level of resources necessary
  • Better staffing environment.

There are four elements to the enhanced recovery programme:

  • Pre-operative assessment, planning and preparation before admission.
  • Reducing the physical stress of the operation.
  • A structured approach to immediate post-operative and during (peri-operative) management, including pain relief.
  • Early mobilisation.”

Having read this explanation you will see how this fits in with the whole idea of “Active Patients” ie. ones who take an active role in managing their own health.

At St.Thomas’ you’re given the choice of participating in the programme. You can opt out but I grabbed the opportunity with both hands. The pre-operative assessment, planning and preparation before admission mean that you are given comprehensive information on what will happen, when it will happen and the likely outcomes. Instead of going into the unknown when you enter hospital for your operation you already have a good idea of what to expect. I found it helped me to become incredibly calm about the whole situation.

Part of the early mobilisation mentioned is being expected to drink fluids as soon as you come round in Recovery and then to be eating solids within 24 hours. A far cry from the 3 weeks “nil by mouth” that I had been through in 1979.

Fistula – yet another part of my learning process. It sounds like some unsavoury fetish but when I was told I had one I checked out its definition – “an abnormal connection between two structures”. Luckily mine were internal, between sections of intestine, so any leaking was kept inside but they can run from inside to outside the body and prove difficult to heal.

Flexible Sigmoidoscopy – a sort of Colonoscopy Lite. Before having my ileostomy the surgeon wanted to check what condition certain parts of my colon were in, so he carried out this procedure so would know what to expect once he wielded the knife.

A colonoscopy looks at the lining of the large bowel and may also look into the lower section of the small bowel. The scope used for a flexible sigmoidoscopy looked to be a much shorter instrument and only goes as far as the left side of the colon (which I guess means up to the sharp bend before the colon travels across the body). The tests require different preparation and sedation.

Gaviscon – disgusting aniseed flavoured pink sludge. As part of the attempts to clear the nausea following my reversal operation I was given a small container of Gaviscon to drink. The smell alone was enough to trigger a reaction but I gulped the whole lot down and within seconds…..well I won’t go into the details but suffice to say I felt a lot emptier afterwards and the pressure on my stomach was suddenly bearable.

It’s said that the most powerful of the five senses for triggering memories is the sense of smell. I am dreading ever coming into contact with anything that smells like it again as I’m sure my instant reaction will not be very pleasant for either myself or anyone within two metres of me.

Haematology – not my most favourite department and not because of the consultants’ abilities as haematologists but their inability to provide follow-up letters in a timely manner. This has now happened at two hospitals. On the first occasion the lack of the letter caused my reversal operation to be postponed. It all worked out fine in the end but I found not being able to persuade them of the urgency of the situation was very frustrating.

Maybe haematology is one of those specialities that is just “vague” because blood disorders are “vague”. I still do not have a definitive answer as to why my platelet count is so low. There have been lots of theories but no conclusive proof, despite tests and full blood counts. We’ve currently left it that I don’t seem to be affected by the low platelets so we don’t need to do any further investigation. I’m thinking that maybe this issue needs escalating.

Innocent Bystander – an unusual phrase to hear in a clinical setting. At the pre-op meeting the surgeon said that when he opened me up he was hoping to find that my colon was an “innocent bystander” ie. the colon was unaffected by the fistulas and adhesions which were present in the small intestine. The flexible sigmoidoscopy seemed to suggest he might be right but once the operation started……

Junior Doctors – the clue is in the name. It’s fascinating to observe the different ways they interact with the patients and how some are very relaxed with an excellent bedside manner and others seem to have had a humour bypass. Maybe it’s a cultural thing. I find myself, mentally, splitting them into two groups – those who should go on to pursue a research career and those who I’d be happy to be treated by.

Knowledge – since my diagnosis over thirty years ago the ability of the patient to gain knowledge of their condition(s) has grown immeasurably. This falls into 2 categories.

Firstly – generic information on Crohn’s, treatments, etc. If anything there is an overload of information available on the internet and a skill I would very much like to develop is being able to quickly sift out the good stuff.

Secondly – knowledge of your own personal medical records. In the UK, for a maximum cost of £50.00, you can request a copy of your medical records from your GP or the hospital(s) where you’ve been treated. I have found this has greatly improved my understanding of how my Crohn’s has progressed.


Loperamide
– or Imodium as it is better known. I first took Imodium back in 1979 to try and control the big D and after 2 weeks ended up in hospital with a perforated bowel. The pharmacist who had dispensed the prescription for one month’s worth of capsules had made a remark that 4 weeks was a long time to be on them. For many years I blamed the Imodium for ending up in hospital.

Fast forward to 2010. After the ileostomy my digestive system would not regulate itself and I was in danger of not being allowed home. The surgeon put me on Loperamide, up to 12 capsules a day, as required. I asked him if it was OK to take it long term and he said yes. Since then I’ve been on 2 tablets a day so my original theory from 1979 has had to be revised. The perforated bowel was the Crohn’s.

Metronidazole – is an anti-infection drug and has been found to be beneficial after surgery. I was put on it for 3 months after my reversal. For me there was one major side effect – my taste buds were shot. It certainly worked on the anti-infection front but I couldn’t wait to get off of it and to be able to taste food properly again.

Naso-gastric Tube – the bit that feeds the aforementioned bile bag. I can put up with most things in hospital but having a tube up your nose, down your throat and into your stomach has to rank pretty high on my “barely acceptable” scale. Probably the only thing higher on the list is nausea and since the tube was there to relieve the nausea it really was JUST the lesser of two evils.

Orabase – gloopy polyfilla for stomas. My stoma had started to become uncomfortable, or rather the area under the backing plate on the pouch was painful. From above all looked OK and I didn’t think to have a look in the mirror to get an all round view. What did make me sit up and take notice was the pouch filling with blood one evening. First thought – internal bleeding. Second thought – ring for ambulance.

Eventually it was found that there was an abscess immediately below the stoma which had burst but had bled into the pouch. I was patched up and sent home with instructions to see the stoma nurse the next day.

She was completely unphased by the situation (but then stoma nurses are always unphased or they wouldn’t do the job they do). I jokingly said to her that what we needed was some polyfilla to fill in the depression caused by the abscess and she produced a tube of Orabase. Problem solved and it never returned.

Pharmacy – the final frontier. The hurdle between hospital and going home. The one thing that stops you leaving at the time you planned s you are told by the Ward Sister that “you just have to wait for pharmacy to deliver your tablets and then you can go.” I have waited 4 hours on one occasion and there is nothing that can be done to speed them up. Guaranteed to bring unnecessary stress.

For inpatients there is a way around the situation. Make friends with the pharmacist on their daily ward round and once you know when you are due to be leaving hospital ask them if they can have your tablets ready and locked in your bedside cabinet ready for discharge. I’ve tried this twice, and it works.

Primary Sclerosing Cholangitis (PSC) – a mouthful to say; an earful to hear; and a brainful to comprehend. I had been sitting in one of our local hospital beds for a few days, undergoing various tests and wondering what new complaint had caused the esophageal varices to be there and then burst.

It was my old consultant (the one who had treated me before I chose to move my care to St.Thomas’ Hospital), doing his ward round, who first mentioned Primary Sclerosing Cholangitis and then liver transplant in the same breath. There was no way I could take it all in so a little later I called over one of the junior doctors and asked her what the long named disease was so that I could look it up on the internet. She told me the name but suggested I might want to refrain from looking it up at present. That was reassuring!


Questions – I’ve learned never to be afraid to ask questions of nurses, doctors, consultants, radiographers etc. Take the opportunity to build your knowledge of your condition.

Reversal – rejoining the two ends of the bowel that formed a stoma, tucking it all back into the abdomen and sewing it neatly up.

Living with a stoma was less fraught than I imagined but I always knew that there was a good chance of the whole procedure being reversed 6 months down the line. I think this made the whole situation easier to deal with and I’m not sure how I would cope with a permanent stoma.

Rutgeert’s Score – this is “an endoscopic scoring system for postoperative disease recurrence in Crohn’s disease”. Yet another new term which appeared on the endoscopy report from the first colonoscopy after my reversal. I was given a score of i0 which is the best score to get and shows no lesions in the distal ileum. I also found the following reported on the Medscape website :


“Rutgeerts score provides prognostic information: 80–85% of patients with a score of i-0 or i-1 will be asymptomatic 3 years after surgery compared with fewer than 10% of those with a score of i-3 or i-4. Among those with a score of i-0 or i-1, the chance of clinical recurrence at 3 years is less than 5%, whereas endoscopic scores of i-2, i-3 and i-4 correlate with 3-year clinical recurrence rates of 15, 40 and 90%, respectively.”
   My three years were up in June 2014.

SAL – Surgical Admissions Lounge – I always thought that the night before your operation you were taken onto the Ward that you would be recovering in and they prepared you for surgery. Maybe a reversal is not considered major surgery or maybe the pressure on beds is too great but I was surprised to be given instructions to report to the SAL on the morning of the op.

It was all very “matter of fact” and probably contributed to my remaining calm throughout the wait to be called.

SeHCAT – or to give it is full name is 23-Seleno-25-Homo-tauro-Cholic Acid Test, which you probably realise is a taurine-conjugated bile acid analog. It tests for BAM and is one of the simplest from a patient’s point of view. You swallow a radioactive pill then wait an hour and get x-rayed. Repeat the x-ray one week later and compare the two levels. The difference shows how much has been reabsorbed and therefore how much has passed out of the system or has been “malabsorbed”.

St.Thomas’ Hospital – one of the leading London hospitals. Situated on the South Bank of the Thames, adjacent to Westminster Bridge and immediately opposite The Houses of Parliament. The colorectal ward is on the 11th floor and the view is truly spectacular. It must help with your recovery as there is always something to see and take your mind off of your current situation.

St.Thomas' Colorectal Ward
St.Thomas’ Colorectal Ward on the 11th Floor

I didn’t expect to end up in St.Thomas’ but my local hospital said that they simply didn’t have the recovery facilities that would be needed after such a major piece of surgery. I’m so glad that they referred me. The inconvenience of getting up to London was far outweighed by the excellent facilities that they have there.

Stoma – from the Greek for mouth and means an opening, either natural or surgically created. Operations involving the creation of an opening are suffixed -ostomy; the prefix describes where the opening is. My 2010 operation was an ileostomy ie. opening formed in the final section of the small intestine. I actually had two stomas – the one from the end of the small intestine and the end of the temporarily redundant large intestine.

(To visualise the next bit it will help if you’re old enough to remember “Spitting Image” on ITV and their puppet of Mick Jagger)

The use of a word meaning “mouth” to describe the opening seemed rather apt as I suffered a prolapse of the lower stoma and as a result it looked like Mick Jagger was trying to escape from my abdomen. A sort of “Alien” moment.

Transjugular Biopsy – the harder way to take a biopsy from the liver. As the name implies the biopsy needle is passed into the jugular vein in the neck and then travels down until it reaches the liver where the biopsy sample is taken. Right up until the last minute it looked like they would choose this route as my low platelet count meant there was a high risk of bleeding and by going the internal route any bleeding would be back into the vein.

On the day of the procedure the doctors decided they could carry out a conventional “plug biopsy” where the needle passes straight through the skin into the liver. All my concerns and mental preparation for the more tricky procedure were in vain or rather not in vein.


Thrombocytopenia
– the long name for low platelet count. There are several theories as to why my platelet count is so low. These range from long term use of Azathioprine; to an enlarged spleen; to “you’ve got bigger than normal platelets so you don’t need as many”; to the “it’s all too difficult to be certain” approach.

Upper GI Endoscopy – sticking a camera where most of the crap comes out of ie. through the mouth. I really don’t like this procedure. I don’t like the anaesthetic spray they use to numb the back of the throat (it tastes of burnt bananas) and I don’t like the gag that goes between your teeth to guide the camera.

Just once I had it done without full sedation. Never again. Nowadays I always ask to be put completely under, even though the recovery time is a couple of hours longer.

Varices – varicose veins, but not just any varicose veins. Ones that specifically develop in the linings of the esophagus and upper stomach.

How did mine get there? The explanation is too long for this post but the way I found I had them was fairly unpleasant and involved bringing up a large amount of congealed blood (which resembled redcurrant jelly) and then being rushed to hospital once the initial shock of the situation had passed and I had managed to call out for help.

I Googled varices and banding, and immediately wished I hadn’t. The first page I read said that 70% of those who have a variceal bleed will have it happen again and for a third of those it will be fatal. If I’ve got the maths right that’s 70% x 33% = 23%, so for almost a quarter of patients suffering variceal bleeding it will be fatal. I think you can see why Google and all that information now readily available on the web is a bit of a double edged sword.

Ward Round – the chance for the lead consultant to have a go at playing Sir Lancelot Spratt (character from the British classic film – “Doctor at Large” – it’s on YouTube – see below). They sweep into the ward surrounded by a gaggle of junior doctors and students. The bigger the group the better the opportunity to “shine”.

I find ward rounds very informative. You can usually learn a few things that you either haven’t asked or nobody has thought it necessary to tell you. It’s also interesting to compare the approaches of the different consultants and their explanations as to what is wrong with you, what they’ve done to you and what they have planned for you.

I’m far too old and crabby to be intimidated by the assembled crowd of eager, and not so eager, faces so I always make sure that I provide a foil to the consultant’s leading role.

Sometimes you really can’t wait for the round to begin. This has usually been preceded by a test for which you desperately want to know the results of or someone has said the magic words “You can go home when the consultant is happy with you”.

The worst thing you can do is go off for a shower only to find that when you return to your bed the Consultant, and attendant gaggle, has already passed though and will not be back until the next day. To avoid this happening you can either shower very quickly, being careful not to fall over, but it’s probably best to stay put in the ward until you’ve been seen.

I’ve used this clip elsewhere but every time I see it there’s a smile on my face.

X-Ray – bit TOO obvious. What about……

Xylocaine Spray – the taste of burnt bananas in an easy to administer spray. If you’ve had an upper GI endoscopy you’ll recognise this taste. The spray deadens the back of the throat so that you don’t feel the camera passing through. I’m finding that just thinking about the spray, and the mouth gag that follows shortly afterwards, is making me feel sick so that’s enough for now….

Y and Z – no interesting terms come to mind for these letters at present. Maybe title of this post should be changed to “The A to X of My Crohn’s ‘Journey'”

Guilt, Research and Planning

Guilt

I feel kind of guilty writing this post as it finds me laid back and generally at one with the world whilst I know there are many fellow IBDers who are really suffering at the moment. You only have to dip into the Crohn’s Community on SoMe to read some sad , harrowing tales.

I’ve come to terms with this guilt by telling myself that my current situation may help others realise that there will be times when life returns to relative normality. As I approach the fifth anniversary of having an ileostomy my memories of that event are starting to fade which is why………

Further Research

Have I mentioned before that I am in the process of writing a book? It will explain the route from diagnosis, in the dim and distant past, to my current state. It has a target readership of, er, one. Obviously I hope it ends up with a few more and proves of help/interest to other sufferers or even medical professionals who want to understand the patient experience from the other end of the endoscope but having said that, I am writing it primarily for…. myself. The reasons?

1)   A new challenge; something to keep the brain functioning; a chance to be creative. I want to see if I am capable of producing something that is half readable?

2)   To achieve a sort of “closure” up to this point, on the basis that once I have everything documented I can put the eBook on a virtual eShelf and leave it there

The book is nearing completion. As part of the process I have been re-reading the posts on this blog. Those covering the period from August 2010 were written as they happened. This re-visit has thrown up a few gaps in my account or need further examination. One passage in particular piqued my interest. It was a comment made by one of the team of surgeons who carried out my ileostomy almost 5 years ago. I saw him at the local hospital a few weeks after the op and he remarked on how well I looked considering “what they had done to me”. Sounded sinister. He went on to describe the operation as a “classic” and one of the “most complex they had ever carried out”. In a game of operation top trumps I’m sure this would score quite highly although the whole thing only took four and a half hours which is relatively quick compared to others I have read about. Maybe the fact it was done using open surgery, as opposed to keyhole, sped things up.

But what exactly had they “done to me”? I emailed the surgeon a few weeks ago to see if he kept records of each operation. He replied that I would need to get access to my patient file from St.Thomas’ and find the Operation Note. As he no longer worked there hospital he had no access to their system but he kindly offered to “translate” the document should I get hold of it.

Up until recently I hadn’t bothered obtaining copies of my St.Thomas’ notes as I had been studiously filing all follow-up letters as I received them and writing up accounts of appointments/procedures for this blog. However it struck me that, for completeness, I should try and get hold of the notes as they may add some detail to the narrative. I filled in a request form and took it, together with the £20 fee and proof of ID, to the Information Governance Department at St.Thomas’. I requested the complete file, with the exception of follow-up letters, and for any x-rays or scans that were available. The hospital’s target was 40 days to produce the requested information but it only took 30 days before it was ready for collection. The packet contained four CDs.

I was eager to find out exactly what was on them. Three discs contained imaging and x-ray files in a format I was unfamiliar with, DICOM. I found a software package on the web, OsiriX, that would open the files and, for non-commercial use, the Lite version could be downloaded free. The software translates the scans into 3D images. Fascinating, almost artistic. Like something out of a Hieronymus Bosch painting. Did I understand what I was looking at? To be honest, no, and I am still trying to find the optimum software settings that will make things clearer.

On the final disc was one large pdf file made up of scans of all my notes but in no particular order. 730 pages covered just under 5 years of treatment. On closer inspection there were many blank pages, mainly the back pages to reports, but even with these deleted the page count was around 650. It took a couple of evenings work to get them into some semblance of order.

I eventually found the Operation Note from October 2010 and decided to take the surgeon up on his offer to “translate” it. I hope he doesn’t regret it. I am awaiting his response so maybe he has thought better of it.

The other pages that immediately grabbed my interest were the Nurses’ notes and observations from my two in-patient stays. It was interesting to compare the nurses’ accounts with my diary entries for each day.The process of revising my original posts is taking a while. As the nights draw in it should focus the mind better.

Haematology II Guy’s Hospital – 25th August 2015

As part of my “closure” I had a routine, six monthly Haematology appointment, or Harmatology as my spell check insists. For the first time I struggled to come up with any questions to ask. I eventually managed the following :

  • Latest platelet count? Just out of curiosity as I knew it would be well outside the normal range
  • Do we need to revisit the Warfarin decision at some point in the future?
  • Do I need to continue with iron tablets?
  • Should I be prescribed more vitamin D capsules?

Answers – 56; No; ask GP to check iron and vitamin D levels

On the basis of the above we agreed that appointments could now be yearly and that suits me fine.

Planning Ahead

Time to think about what’s on the horizon. Following the pattern of the last couple of years there will be the yearly upper GI endoscopy in late October with the possibility of further procedures if they find I need variceal banding. The lead time for booking an endoscopy is six weeks. If the system is working correctly then the appointment should automtically get booked but I never leave it to chance and normally give Endoscopy Appointments a ring. I half minded to leave it this time and see what happens.

Then there’s the six monthly gastro appointment in early November for which I need to make sure I’ve got the results of a calprotectin test back….and, depending upon the result, potentially a two yearly endoscopy to see if I have managed to remain in clinical remission and to have a look at my anastomosis.

…but hold on. I’ve just realised I had a colonoscopy in February this year. Have I really managed to put Crohn’s so far to the back of my mind that I have forgotten havng a camera stuck where the sun don’t shine? Maybe it’s because I was given a larger dose of sedative than usual and was out cold for the procedure.